Editorials
Redirection in treatment goals: withdrawal of mechanical ventilation outside of the intensive care unit Anton-Paul T Mayer1,2 ‘GIVING CHOICE TO FAMILIES ON A DIFFICULT JOURNEY’ Despite extensive technological advances and improved survival in paediatric intensive care unit (PICU) patients, many 1
Department of Paediatric Intensive Care, Sheffield Children’s Hospital (NHS) Foundation Trust, Sheffield, UK; 2Bluebell Wood Children’s Hospice, Sheffield, UK
Correspondence to Dr Anton-Paul T Mayer, Bluebell Wood Children’s Hospice, Cramfit Road, North Anston, Sheffield S25 4AJ, UK; [email protected] Arch Dis Child September 2014 Vol 99 No 9
families are faced with a redirection in the aims of treatment to a journey of palliation. This transition in care from cure to palliation is difficult (and sometimes unimaginable) for the families involved, and it is also challenging for professionals, technically and emotionally. There are no ‘second chances’ in end-of-life care. The experience and memories of that journey will remain with the relatives forever. There is increasing objective evidence of the importance of parental choice during
the end-of-life care of their child, and this is no less so in the choices surrounding place of death.1 Laddie et al2 describe their experience of withdrawal of mechanical ventilation outside the PICU, with a view to providing guidance for professionals who may be involved in such terminal care. In the report, dividing the process into five phases provides a practical framework, and the importance of experience and training is highlighted at all stages.
Preparation End of life is unpredictable, and withdrawal of mechanical ventilation outside the PIC means that the team embarking on this redirection-in-care will be working in an unfamiliar environment. Although the local palliative care team is familiar with the surroundings, it may be less familiar with the process of endotracheal tube extubation. 795
Editorials Table 1 Summary of the phases of care in relation to withdrawal of life-sustaining ventilation out of the paediatric intensive care unit2–4 Phase of care
Child/family
Environment/staff
Introduction of withdrawal and preparation
Discuss parallel planning and potential outcomes Family choices (place/time) Personal resuscitation plans Anticipatory management of symptom control Faith and spiritual needs Contact numbers End-of-life care plan confirmation Rationalisation of medication Discuss time frame for extubation Agree symptom management plan Provide time for privacy and rituals Discuss possible symptoms and management Contact details of leading team Symptom management Communication
Joint planning between teams Advanced care plan for child Consult with palliative care service Equipment/medications required Transport/staff Organ donation/autopsy
Pre-transfer
Extubation
Postextubation
Postdeath
Faith and spiritual needs accommodated Registration of death Funeral care arrangements On-going bereavement support
Place of care/practicalities Establish team roles Contact appropriate local services Diagnosis/certification/coroner Consider pre-emptive symptom management Constant symptom review Plan ongoing fluid management Ensure ongoing care provision (24 hours telephone support) Verification Medical certification Child death overview panel Ensure adequate bereavement support Establish place of care of body
control, and adherence to accepted clinical and professional guidelines.3 The first step after transfer from the PICU is to create an environment for the family that is not an intensive care unit, but more like home. Monitoring probes, sensors and electrical leads should be removed, which can be difficult for the families—especially those who have spent a long time with ‘beeps’ and ‘alarms’. As ever, prior explanation is essential, and I always allow preparatory period of privacy for the family and relatives, while the professional team retire to an adjoining room. Second, after removal of the endotracheal tube and mechanical ventilation, a number of potential symptoms may occur and these should be predicted and managed. This period can be prolonged, so it is important that each team member understands their role. These symptoms range from the need for adequate sedation and analgesia for distress and anxiety, through to nebulised adrenaline for stridor. Planned prior use of steroids to minimise stridor can be invaluable.
Aims of care and end-of-life support Early liaison with the local team should be undertaken. Families must never be promised an option at the end of life that is not guaranteed to be available. Many other teams are often involved, including the team transporting the child from the PICU. Preplanning and thorough briefing for teams as well as the families is therefore vital. It is essential to cover information about the most likely process and the possible outcomes. I urge readers to refer to the ‘Together for Short Lives’ website (http://www.togetherforshortlives.org.uk) for a wealth of documentation surrounding palliative care. In particular, a document A Care Pathway to Support Extubation within Children’s Palliative Care Framework.3 The information provided to the family needs to be detailed, clear and realistic. Families need to understand that the transfer out of hospital is a one-way journey, with the aims of treatment redirected to palliation, and with a time course that can be unpredictable. In my experience, some children may survive and continue to live for a significant period with a good quality of life, and this outcome needs to be discussed in advance of transfer, however unlikely. The unpredictable nature of withdrawal of mechanical ventilation means that it is useful to discuss the process with the family as a series of ‘what if?’ scenarios and their outcomes. If end-of-life care is to occur at home, an advanced visit by a member of the team is invaluable since it may avoid unforeseen problems such as access to the property. 796
The timing of withdrawal of mechanical ventilation also needs to be considered. For example, in a child who is expected to breathe spontaneously after endotracheal tube extubation, it is prudent to plan extubation soon after arrival at the chosen destination, thereby minimising the child’s discomfort. In other circumstances, one may delay endotracheal tube extubation in order to give the family more time in their new environment, especially if this is unfamiliar to them—as in transfer to a hospice. In this setting, there will be other questions that need to be answered: who will perform the endotracheal tube extubation, and will the PICU team remain with their equipment until this procedure is carried out? Our local practice for patients transferred from the PICU to the hospice for end-of-life care is, determine the needs of family and child; to give them the time that they need and to provide the support that they need until they are ready. We have our own mechanical ventilator at the hospice, and I have a dual appointment as consultant in intensive care and in palliative care.
Palliative care after redirection of aims in management Having made the decision with the family to transfer their child to a hospice or home for end-of-life care, there are certain practicalities in the subsequent management that I have found helpful to follow, that is, de-intensification of monitoring, symptom
Empowering a family to have control over where and when their child dies is a vitally important aspect in end-of-life care. This can be provided with good teamwork from well-prepared and trained individuals working together in what will ultimately be tragic circumstances. There are no second chances for the family or medical practitioners. Simulation training has proved to be a useful adjunct to theoretical training, and is an underutilised resource. There are established courses for community and hospice nurses to be trained in verification of death. This avoids calling upon out-of-hours general practitioners who the family may not know, and who may themselves be inexperienced and unfamiliar with end-of-life care in the hospice or at home. Again, preparation and communication with the family general practitioner should avoid any confusion. The article by Laddie et al2 highlights the importance of knowing the cause of death and whose responsibility it will be to complete the documentation. An inability to state a cause of death does not prohibit withdrawal of mechanical ventilation outside the PICU if that is the wish of the family. However, the case should be discussed with the local coroner before discussion with the family, so that their expectations of what can be accomplished are realistic. The forthcoming introduction of the role of the medical examiner in the UK will provide an opportunity to clarify this area of practice.4 5 Additionally, the family should be aware that death outside the PICU does not preclude either limited Arch Dis Child September 2014 Vol 99 No 9
Editorials organ donation or hospital autopsy but, as ever, prior planning is essential. After the child has died, the family may have certain wishes or faith rituals.6 They may just need time. In a hospice, there are often dedicated bereavement suites where the body can remain until burial or cremation. Sometimes, these facilities can be used by the family; even if death occurs at home, but if not, similar arrangements can be made using cold plates and portable air conditioners. Adequate bereavement follow-up should be prearranged; it is again useful for this to be carried out at the place of the family’s choosing involving any teams that may have been involved in the child’s terminal care. Counselling services can be invaluable at all points in this journey for the family.
Guidelines and the future of out-of-hospital paediatric terminal care This article by Laddie et al2 adds to the existing professional guidelines3 on withdrawal of life-sustaining ventilation distant from PICU (summarised in table 1).
Arch Dis Child September 2014 Vol 99 No 9
It would appear that palliative care is embarking on a journey in its own right, not dissimilar from any relatively new subspecialty in medicine. This journey must encompass training, education and research. In respect of the latter, collaboration within the speciality and between specialities is required so that the evidencebase is available to all. The importance of involving families and children in research, where possible, should not be forgotten.
Competing interests None.
Arch Dis Child 2014;99:795–797. doi:10.1136/archdischild-2014-306417
REFERENCES 1
2
3
4
Provenance and peer review Commissioned; internally peer reviewed. To cite Mayer A-PT. Arch Dis Child 2014;99:795– 797.
5
Received 9 May 2014 Revised 6 June 2014 Accepted 12 June 2014 Published Online First 3 July 2014
6
Meyer E, Burns JP, Griffith JL, et al. Parental perspectives on end-of-care in the pediatric intensive care unit. Crit Care Med 2002;30:226–31. Laddie J, Craig F, Brierley J, et al. Withdrawal of ventilatory support outside the intensive care unit: guidance for practice. Arch Dis Child 2014;99: 812–16. Cottrell S, Edwards F, Harrop E, et al. A Care Pathway to Support Extubation within Children’s Palliative Care Framework. 2011. http://www.togetherforshortlives. org.uk/assets/0000/1059/Extubation_Care_Pathway. pdf Longden JV, Mayer A. Family involvement in end-of life care in a paediatric intensive care unit. Nur Crit Care 2007;12:181–7. Furness P. Coroners and medical examiners: mutualism, commensalism or parasitism? Med Leg J 2012;80:86–101. Wiener L, McConnell DG, Latella L, et al. Cultural and religious considerations in pediatric palliative care. Palliat Support Care 2013;11:47–67.
▸ http://dx.doi.org/10.1136/archdischild-2013-305492
797
Copyright of Archives of Disease in Childhood -- Education & Practice Edition is the property of BMJ Publishing Group and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Redirection in treatment goals: withdrawal of mechanical ventilation outside of the intensive care unit Anton-Paul T Mayer1,2 ‘GIVING CHOICE TO FAMILIES ON A DIFFICULT JOURNEY’ Despite extensive technological advances and improved survival in paediatric intensive care unit (PICU) patients, many 1
Department of Paediatric Intensive Care, Sheffield Children’s Hospital (NHS) Foundation Trust, Sheffield, UK; 2Bluebell Wood Children’s Hospice, Sheffield, UK
Correspondence to Dr Anton-Paul T Mayer, Bluebell Wood Children’s Hospice, Cramfit Road, North Anston, Sheffield S25 4AJ, UK; [email protected] Arch Dis Child September 2014 Vol 99 No 9
families are faced with a redirection in the aims of treatment to a journey of palliation. This transition in care from cure to palliation is difficult (and sometimes unimaginable) for the families involved, and it is also challenging for professionals, technically and emotionally. There are no ‘second chances’ in end-of-life care. The experience and memories of that journey will remain with the relatives forever. There is increasing objective evidence of the importance of parental choice during
the end-of-life care of their child, and this is no less so in the choices surrounding place of death.1 Laddie et al2 describe their experience of withdrawal of mechanical ventilation outside the PICU, with a view to providing guidance for professionals who may be involved in such terminal care. In the report, dividing the process into five phases provides a practical framework, and the importance of experience and training is highlighted at all stages.
Preparation End of life is unpredictable, and withdrawal of mechanical ventilation outside the PIC means that the team embarking on this redirection-in-care will be working in an unfamiliar environment. Although the local palliative care team is familiar with the surroundings, it may be less familiar with the process of endotracheal tube extubation. 795
Editorials Table 1 Summary of the phases of care in relation to withdrawal of life-sustaining ventilation out of the paediatric intensive care unit2–4 Phase of care
Child/family
Environment/staff
Introduction of withdrawal and preparation
Discuss parallel planning and potential outcomes Family choices (place/time) Personal resuscitation plans Anticipatory management of symptom control Faith and spiritual needs Contact numbers End-of-life care plan confirmation Rationalisation of medication Discuss time frame for extubation Agree symptom management plan Provide time for privacy and rituals Discuss possible symptoms and management Contact details of leading team Symptom management Communication
Joint planning between teams Advanced care plan for child Consult with palliative care service Equipment/medications required Transport/staff Organ donation/autopsy
Pre-transfer
Extubation
Postextubation
Postdeath
Faith and spiritual needs accommodated Registration of death Funeral care arrangements On-going bereavement support
Place of care/practicalities Establish team roles Contact appropriate local services Diagnosis/certification/coroner Consider pre-emptive symptom management Constant symptom review Plan ongoing fluid management Ensure ongoing care provision (24 hours telephone support) Verification Medical certification Child death overview panel Ensure adequate bereavement support Establish place of care of body
control, and adherence to accepted clinical and professional guidelines.3 The first step after transfer from the PICU is to create an environment for the family that is not an intensive care unit, but more like home. Monitoring probes, sensors and electrical leads should be removed, which can be difficult for the families—especially those who have spent a long time with ‘beeps’ and ‘alarms’. As ever, prior explanation is essential, and I always allow preparatory period of privacy for the family and relatives, while the professional team retire to an adjoining room. Second, after removal of the endotracheal tube and mechanical ventilation, a number of potential symptoms may occur and these should be predicted and managed. This period can be prolonged, so it is important that each team member understands their role. These symptoms range from the need for adequate sedation and analgesia for distress and anxiety, through to nebulised adrenaline for stridor. Planned prior use of steroids to minimise stridor can be invaluable.
Aims of care and end-of-life support Early liaison with the local team should be undertaken. Families must never be promised an option at the end of life that is not guaranteed to be available. Many other teams are often involved, including the team transporting the child from the PICU. Preplanning and thorough briefing for teams as well as the families is therefore vital. It is essential to cover information about the most likely process and the possible outcomes. I urge readers to refer to the ‘Together for Short Lives’ website (http://www.togetherforshortlives.org.uk) for a wealth of documentation surrounding palliative care. In particular, a document A Care Pathway to Support Extubation within Children’s Palliative Care Framework.3 The information provided to the family needs to be detailed, clear and realistic. Families need to understand that the transfer out of hospital is a one-way journey, with the aims of treatment redirected to palliation, and with a time course that can be unpredictable. In my experience, some children may survive and continue to live for a significant period with a good quality of life, and this outcome needs to be discussed in advance of transfer, however unlikely. The unpredictable nature of withdrawal of mechanical ventilation means that it is useful to discuss the process with the family as a series of ‘what if?’ scenarios and their outcomes. If end-of-life care is to occur at home, an advanced visit by a member of the team is invaluable since it may avoid unforeseen problems such as access to the property. 796
The timing of withdrawal of mechanical ventilation also needs to be considered. For example, in a child who is expected to breathe spontaneously after endotracheal tube extubation, it is prudent to plan extubation soon after arrival at the chosen destination, thereby minimising the child’s discomfort. In other circumstances, one may delay endotracheal tube extubation in order to give the family more time in their new environment, especially if this is unfamiliar to them—as in transfer to a hospice. In this setting, there will be other questions that need to be answered: who will perform the endotracheal tube extubation, and will the PICU team remain with their equipment until this procedure is carried out? Our local practice for patients transferred from the PICU to the hospice for end-of-life care is, determine the needs of family and child; to give them the time that they need and to provide the support that they need until they are ready. We have our own mechanical ventilator at the hospice, and I have a dual appointment as consultant in intensive care and in palliative care.
Palliative care after redirection of aims in management Having made the decision with the family to transfer their child to a hospice or home for end-of-life care, there are certain practicalities in the subsequent management that I have found helpful to follow, that is, de-intensification of monitoring, symptom
Empowering a family to have control over where and when their child dies is a vitally important aspect in end-of-life care. This can be provided with good teamwork from well-prepared and trained individuals working together in what will ultimately be tragic circumstances. There are no second chances for the family or medical practitioners. Simulation training has proved to be a useful adjunct to theoretical training, and is an underutilised resource. There are established courses for community and hospice nurses to be trained in verification of death. This avoids calling upon out-of-hours general practitioners who the family may not know, and who may themselves be inexperienced and unfamiliar with end-of-life care in the hospice or at home. Again, preparation and communication with the family general practitioner should avoid any confusion. The article by Laddie et al2 highlights the importance of knowing the cause of death and whose responsibility it will be to complete the documentation. An inability to state a cause of death does not prohibit withdrawal of mechanical ventilation outside the PICU if that is the wish of the family. However, the case should be discussed with the local coroner before discussion with the family, so that their expectations of what can be accomplished are realistic. The forthcoming introduction of the role of the medical examiner in the UK will provide an opportunity to clarify this area of practice.4 5 Additionally, the family should be aware that death outside the PICU does not preclude either limited Arch Dis Child September 2014 Vol 99 No 9
Editorials organ donation or hospital autopsy but, as ever, prior planning is essential. After the child has died, the family may have certain wishes or faith rituals.6 They may just need time. In a hospice, there are often dedicated bereavement suites where the body can remain until burial or cremation. Sometimes, these facilities can be used by the family; even if death occurs at home, but if not, similar arrangements can be made using cold plates and portable air conditioners. Adequate bereavement follow-up should be prearranged; it is again useful for this to be carried out at the place of the family’s choosing involving any teams that may have been involved in the child’s terminal care. Counselling services can be invaluable at all points in this journey for the family.
Guidelines and the future of out-of-hospital paediatric terminal care This article by Laddie et al2 adds to the existing professional guidelines3 on withdrawal of life-sustaining ventilation distant from PICU (summarised in table 1).
Arch Dis Child September 2014 Vol 99 No 9
It would appear that palliative care is embarking on a journey in its own right, not dissimilar from any relatively new subspecialty in medicine. This journey must encompass training, education and research. In respect of the latter, collaboration within the speciality and between specialities is required so that the evidencebase is available to all. The importance of involving families and children in research, where possible, should not be forgotten.
Competing interests None.
Arch Dis Child 2014;99:795–797. doi:10.1136/archdischild-2014-306417
REFERENCES 1
2
3
4
Provenance and peer review Commissioned; internally peer reviewed. To cite Mayer A-PT. Arch Dis Child 2014;99:795– 797.
5
Received 9 May 2014 Revised 6 June 2014 Accepted 12 June 2014 Published Online First 3 July 2014
6
Meyer E, Burns JP, Griffith JL, et al. Parental perspectives on end-of-care in the pediatric intensive care unit. Crit Care Med 2002;30:226–31. Laddie J, Craig F, Brierley J, et al. Withdrawal of ventilatory support outside the intensive care unit: guidance for practice. Arch Dis Child 2014;99: 812–16. Cottrell S, Edwards F, Harrop E, et al. A Care Pathway to Support Extubation within Children’s Palliative Care Framework. 2011. http://www.togetherforshortlives. org.uk/assets/0000/1059/Extubation_Care_Pathway. pdf Longden JV, Mayer A. Family involvement in end-of life care in a paediatric intensive care unit. Nur Crit Care 2007;12:181–7. Furness P. Coroners and medical examiners: mutualism, commensalism or parasitism? Med Leg J 2012;80:86–101. Wiener L, McConnell DG, Latella L, et al. Cultural and religious considerations in pediatric palliative care. Palliat Support Care 2013;11:47–67.
▸ http://dx.doi.org/10.1136/archdischild-2013-305492
797
Copyright of Archives of Disease in Childhood -- Education & Practice Edition is the property of BMJ Publishing Group and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
